Preparing and implementing a system for giving the diagnosis and providing counselling

To improve conditions around the communication of the diagnosis and the provision of support at all stages of the disease.

Context and issues

An Alzheimer’s diagnosis is established on the basis of an evaluation of cognitive, memory, executive and instrumental functions, and is usually made at a specialized consultation with a neurologist or a memory centre at the request of the patient’s primary-care doctor.

For this slowly evolving disease, which is so harrowing and disruptive for the patient and his or her family, giving the diagnosis may require a repeated and concerted approach involving a variety of professionals based on good practice.

Given the specific characteristics of this disease, which call for long-term social care above and beyond the medical treatment itself, the diagnosis must be given as part of a package of information for the patient and the family, not only about the disease itself but also about how the treatment plan will work and the possibility of social support. This information about the disease involves mobilising all healthcare professionals and particularly the future case coordinators.

The process includes a first stage after giving the diagnosis which should take place ,during a specialist memory consultation, whether this is with an independent neurologist or in a public or private hospital, , and a second stage of confirmation of the diagnosis, explanation and support during consultations with the primary-care doctor.

It is therefore important to define good practice for the announcement, along the lines of the approach provided for, in the implementation of the national cancer plan, covering all the situations likely to be encountered and the role of each partner (carer, primary-care doctor, independent neurologist, hospital team, patients’ associations, medico-social partners etc.) involved with the patient.

The PLASA1 research programme is due to publish its conclusions in March 2008. Based on these data and previous studies, the HAS will draw up recommendations for how Alzheimer’s follow-up should be provided and the role of each actor.

Mesure

Description of the measure

Drafting and validating a system of reference for communication of diagnosis and the associated support (good practice, roles of actors, tools for sharing information, conditions for follow-up for the carer-patient couple);

Implementing the announcement and support arrangements with primary-care doctors, adapting current pricing where necessary.

Implementation details

Drafting of the arrangements by a working group.

Validation of the arrangements by a consensus group working with the HAS.

Producing a reference system on the basis of the recommendations.

Creating specific training

Adapting of pricing where necessary the application of the reference system to the practitioners concerned (primary-care doctor, independent neurologists, external hospital "Alzheimer’s assessment" pricing for memory units).

1 The PLASA study, "Plan de Soin et d’Aide spécifique à la maladie d’Alzheimer" (care and support plan specific to Alzheimer’s disease, a hospital clinical research programme or Programme hospitalier de recherche clinique, PHRC, 2002 and 2006) tests the effectiveness of a support and care plan in dealing with loss of autonomy, the carer’s burden and recourse to treatment. This multicentric randomised study followed 1121 patients suffering from Alzheimer’s disease for four years. Half the randomised patients were followed up according to the recommendations of the Treatment Plan, and the other half according to the usual practice of the centres.

Drafting the arrangements
Preparatory work: €0.1 million for the conference
Source: state budget - Ministry of Health
Implementation of the arrangementsReinforcement of memory units.
Adapting pricing for independent professionals.

Evaluation

Arrangements in place in over 50% of specialist units by 2010 Reduction of the caregiver’s burden (ZARIT) at the beginning of the disease
Number of trial doctors
Number of patients concerned
External evaluation based on indicators to be defined (satisfaction, cost etc.)